Stories from a life with chronic pain.

Post navigation

It has been a very flarey week. Just when I start to recover and function after the weather changes, it decides to change again. I know, I know, I live in Melbourne, which is famous for its four seasons in one day tricks.

The evil sky.

Whenever I explain to somebody how much the weather influences my pain and symptoms, I am told that I should move to somewhere with a more stable climate. These are not ill intentioned suggestions, it’s simply that people like to solve problems and when the problem is weather, the first solution is moving. I have heard this from more people than I can even remember, both loved ones and strangers. Relocation destination ideas have ranged from Queensland, to Tasmania, to Perth and all the way over to Canada.

Unfortunately, relocation is not currently an option for me. I require a lot of help and that means that I need to be close to family. I have finally found a wonderful pain specialist who is helping me to improve my quality of life using ketamine infusions. People literally search the world for the right specialist to help their complicated medical conditions, so when one is found it’s a good idea to hold on to them. I also have very little money and from the looks of the new Australian budget plans, I’m going to have even less. Relocating is expensive and just not a feasible option at this time.

If a rich person happens to want to fund my move to a place where the sea air is rich and the clouds are few and also fund my flights back for medical treatment then sure, I’ll move. Come at me, mysterious rich people.

Until then, I’m stuck here in Melbourne, where the weather comes in beautiful and sudden waves that bash me around like dislodged seaweed.

How does weather affect me? Let me count the ways…all of them. All the weather changes, all the CRPS symptoms. It’s all of them.

Heat sets me alight with burning from my bones right through to the place that my skin stops being my skin and the air around me begins. Sometimes, the burning is explosive, like fireworks or nuclear missiles. Sometimes, it’s more tingly, like an itch that I just can’t scratch. Usually, it feels like I’m covered with the sort of sensitive skin that you might find under the fluid of a blister that you happened to pop and pick at. Sometimes the burning is concentrated in specific areas, usually it’s everywhere or on its way to everywhere.

The cold sinks into my joints like it’s been directly injected. It’s an aching like no other. A chill that I can’t warm up, can’t escape. When I do start to get warm, my body overreacts and suddenly I am sweating, burning and freezing at the same time. I feel as though I’m aware of every joint in my body and that they are all made of razor wire instead of cartilage.

Humidity causes my body to puff up as though it’s preparing to float away. Anywhere that can inflame, will inflame and that’s basically most of the wheres in the body. The inflammation burns and aches and cannot stand the lightest touch and gets upset about clothing and movement and is basically just a whiny jerk.

These probably sound like rather severe reactions, however there doesn’t need to be a severe weather change to set them off. The slightest difference can do it, the slightest changes in air pressure and those other atmospheric things that happen when the weather changes that I don’t fully understand.

Along with the different types of pain that I have to navigate my life around, there are some fun extra challenges that come with a malfunctioning nervous system.

Any of the weather related flares described above also bring increased, sometimes crippling fatigue. You know, can’t physically pull myself up from the floor fatigue. It’s not even relaxing, like fatigue should be, because many of my muscles tense in reaction to pain, or twitch, or spasm, or have me rolling around because I can’t get up and I can’t stay still.

Then there’s the symptom that child-me would have simply referred to as being “unco”. Signals in my nervous system aren’t all getting to where they need to go. Some of them need to go to Hell and instead they just keep bouncing around my neurons, but some of them need to go to parts of my body that I’m trying to move and they just…don’t…quite…get…through…and then I bump into the doorway instead of walking through it. Or, I drop the glass instead of placing it on the bench. Or, I whack my arm on the wall instead of just grabbing some toilet paper like a regular person. You see, there’s really no better way to describe this than unco, except maybe unco to the max.

Always, CRPS flares bring the painbrain. Spellcheck tells me that painbrain isn’t a word, but I assure you, it’s a very real thing. Brains are ridiculously special and powerful and a little bit magical, but they still can’t do everything at once. CRPS means that my nervous system gets flooded with signals and my dear, sweet brain simply can’t interpret them all at the same time. However, that doesn’t stop it from trying and the result is a disconnectedness between thoughts, gaps that don’t belong and strange black holes that swallow the word that I was going to say and spit out something irrelevant like “capybara” instead.

Not that capybaras are irrelevant, they’re basically as magical as unicorns and llamas, it’s just not helpful to say “capybara” when you actually mean “carrot”, or “vacuum”, or “please can you make me a cup of tea”.

There are plenty of frustrating things about living with CRPS, however, not being able to control the weather is very high on the list. I am the sky’s puppet, whether I like it or not. I can’t fight the sun, or the moon, or the air. I can’t scare the clouds off by barking madly like my fluffy dog has tried to teach me to do. All I can do is manage my symptoms and try to minimise the flares by being the strongest version of me that I can be.

That’s the whole point of me writing today at all, because the strongest version of me can do something, even just a little thing, to keep herself sane while the warm winds cause havoc in her body. She can explain some symptoms to you and maybe you relate, or now understand her a little bit better. She can type for a while, even though it burns and she can find a sense of accomplishment in having written something today, even though she’s not sure it’s made sense until the tenth re-read beams some sort of clarity through the fog of painbrain.

The strongest version of me can’t push through anything, she’s not Supergirl, but she can push through this particular obstacle on this particular day.

And I’m proud of me for that.

Do you live with chronic pain or illness? How do weather changes affect you?

I’m back! I’ve missed you guys. Sometimes blogs get sick, just like people do, but it’s OK, Rellacafa is feeling much better now.

As for me, I’m feeling pretty run-down and determined. They aren’t the most obvious of emotional state friends, yet, here I am. My feelings are like that polar bear and wolf that play together, the ones I spent a lot of time awwwwww-ing at earlier today.

Autumn tends to take a massive toll on my sensitised nervous system, however I refuse to let it plummet me into the depressive depths of this time last year. I’m going to stand up here on the surface and take my beating like a warrior. A sexy, viking warrior. Like Ragnar Lothbrok. I’m going to take this battering just like Ragnar would. Mmmmm, Ragnar.

…

…

OK.

…

OK, I’m back. Sorry about that. I watched the season 2 finale of Vikings last night and now my head is simply full of it. I’m going to miss those brutal spunks.

Wait…

OK. Now you get it.

A couple of days ago, I went on adventure that involved me driving to the city, which is approximately one album away from where I live. Regina Spektor’s “What We Saw From the Cheap Seats” for the drive in and Lissie’s “Back to Forever” for the drive home, if you must know. And yes, I did sing along the entire time because as far as I’m concerned, that is a very important part of being a good driver.

My adventure took me to a writing workshop about sharing invisible lives and telling personal stories. Stories like yours, stories like mine. Most stories are interesting if you tell them in the right way and I’m a firm believer that we can always learn to do things better. Except maths. Once you do the maths right, that’s about as far as maths can go. Your thing equals the right thing and then you win. Maths is pretty boring like that. Which is why I like stories much better.

As an added bonus, I had the pleasure of meeting Michelle from Living With Bob (Dysautonomia). It’s wonderful to meet internet friends in real life! Us bloggers with chronic pain and illnesses rarely get the chance to do so on account of that involves at least two of us being well enough to leave the house and socialise on the same day, a phenomenon with a similar occurrence rate to solar eclipses. I guess. Let’s not pretend that I know anything about solar eclipses, I just assume they’re really rare because the sun doesn’t disappear from the sky that often. Except at night, but we’re eclipses, not sunsets. We’re special.

It was lovely to go and talk about writing with other writers, it made me feel more like one of them. In spite of having to work around constant pain and setbacks, I feel very strongly that it’s important for my sanity that I keep writing. Social events like workshops can be great for getting re-inspired or finding a new perspective on things. As someone who is often secluded from the world, I have some inside knowledge about how important it is to get out and experience different things whenever possible. I will share it with you now: VERY VERY IMPORTANT.

I also think that learning in general is very important. For this reason, I have started one of those free, online university courses. You know, the ones that pop up in your social media feeds and guilt you into feeling like you don’t try hard enough at life. I thought I’d try one of those. I want to put new stuff in my brain and I don’t have the funds or functionality to attend actual classes of any sort right now. I’m learning about neurobiology, because aside from being relevant to my every day life, it’s just plain interesting to me. I’ll let you know how I go…

And that’s it from me, for now. I shall now get back to the business at hand, or, to be punny and specific, in my hands. That business involves trying to figure out what temperature it is and how much swelling and pain determining such things requires. CRPS is the mystery that just keeps on giving. It’s a mystery that’s bigger than today. Which makes this whole paragraph a fancy way of saying that I’m going to stop writing and watch TV.

Ever so slowly, I weave my way through more and more activities which, when lined up in a row, spell “functioning”.

They’re the strangest feelings, the ones that come after doing things. Pleasant but partly opaque, difficult to distinguish and define. Feelings like accomplishment, value and joy seem like strangers when they return from a lengthy spell of absence. It takes practice to appreciate their light when it comes shining through the dense fog of prolonged uselessness.

It takes determination to reflect such light, to send it sparkling outwards, trusting that it will illuminate new possibilities.

I’m starting to see more and more things that I could potentially do…

Dreaming about the future helps the process of building a solid launchpad in the now. A while back, I set three goals and have spent the time since then chipping away at them. My physical strength is gradually improving as I go for walks, move around regularly and rest enough in between to keep my pain levels low.

I’ve been on a few solo trips to the grocery store, planned meals myself and cooked some exciting dishes. I’ve eaten a lot more vegetables and a lot less filler. I’ve baked delicious treats that don’t throw my digestion off course and this one time, I even baked a cake just because I felt like it. It was more exciting than it sounds…

I once had to stop a friend showing me pictures of pretty cakes because I just couldn’t wrap my head around the idea that some people have enough energy/functionality to be able to cook for fun and not just necessity. It hurt, to see fun food when I was struggling to simply have meal time food available.

I have been reading every day, exploring blogs and news and tucking myself in with a novel at night. I’ve been trying to note down blog ideas or general life realisations as they happen, finally accepting that my brain won’t just hold onto them for later, no matter how genius or nonsensical they are. I’m yet to achieve some sense of writing every day, but I see that achievement unlocking, not too much further down the path ahead.

I’m starting to see the pay off for what I have already done.

I was able to launch. Off the launchpad. The metaphorical one that I mentioned earlier. It’s constructed of hard work and dedication to health. Having built up enough strength to launch, I was able to say yes when a spontaneous opportunity for adventure arose.

On Friday, I sailed across Port Phillip Bay with my dad in his tandem peddle powered kayak sailboat thing. It was awesome! The sail means that there’s not all that much peddling to do and each peddle counts for quite a bit thanks to the size of the flippers underneath the boat. It was fun to relax in the sun, soak in the ocean breezes and splash through waves when we headed into the wind.

Melbourne on the horizon.

We were out on the water for most of the day. Afterward, I promptly conked out for over twelve hours, bumbled through some of Saturday afternoon, conked out for another twelve hours and crashed out on the couch for what remained of Sunday. I’m still feeling the tiredness in my limbs today, but I wouldn’t expect anything less.

I do have CRPS after all. It doesn’t give days off, but it does back down a bit when I’m lucky enough to have my treatment and physical strength ducks all lined up in a row.

A chance to expend energy and then be exhausted, rather than flaring like crazy, is exactly what I have been working for.

My goals for strength, health and creativity aren’t finite. I will keep on working at them as long as my body allows it and then some. The stronger I am, the more I am able to control the pain of CRPS and the more that I feel like a functioning, useful person.

I’m so grateful for the lower pain levels that the ketamine infusion have brought, it’s worth working hard in order to keep them down as long as possible.

I will let the light in and then sparkle it out. I will follow where it leads.

A while back, I took a long break from social media. I left myself out of the loop for a couple of months because I was overwhelmed, wasn’t coping well and felt like my online world was a big mess of obligation and crap. I realised that feeling that way meant that I was doing social media wrong.

I’d misstepped and followed a tangent trail too many. I’d gotten lost in the vastness of cyberspace and I was pretty sure that George Clooney was not going to show up with a jetpack and propel me back to safety. Although, that would have been nice. Sandra Bullock gets everything.

I realised that if I wanted to enjoy interacting online again, then some things were going to have to change. Living with CRPS means that I spend a lot of time alone at home. Without the internet, that time can feel as isolating as the situation literally is. Connecting with other people online isn’t just an escape, it’s an adventure, a journey and a way to explore the world when illness is trying to keep me hostage.

Click for source.

I set out to create a my own little corner of cyberspace in which I not only felt comfortable, but also enriched, inspired, entertained and appreciated. I reflected on the ways that I had been upset by online interactions in the past and how I might have approached things differently, or reacted more effectively. I considered the types of posts that tended to make things twitch in the this-is-so-annoying corner of my brain and the types of posts that made me ponder, or giggle, stuff that left me happy that I checked my news feeds that day.

I recognised that in the years that I have been blogging and using social media, I have been through several different phases in how I use different platforms and how I connect with other people.

And, at times, I’ve been a dick. Let’s just get that out in the open. I’m sure many people can relate to having been a dick at least once before they learned better.

Phase 1: Reciprocate or die

Six or so years ago, social media was small enough that it was easy to slide into a community of people interested in a certain subject and make new friends. I started blogging and soon after, I was Facebook friending others with CRPS and it was easy to get to know one another through updates and chats. I predominantly tweeted with others from Melbourne and felt like I was a part of my local online community, even though I was rarely out in the real one.

My Twittering pattern used to consist of something like “follow somebody that looks interesting, wait to see if they follow back, unfollow if they don’t want to be friends”. I was only interested in following people who were interested in following me because that felt fair and worthy of my time. If somebody dared to unfollow me, I’d unfollow them right back, feeling hurt and betrayed over some unspoken agreement that never existed.

I’d be hurt if somebody that I never interacted with unfriended or unfollowed me and I’d continue following people that I regularly found annoying or uninteresting out of a sense of obligation.

It all felt so personal.

Phase 2: Please like me

This phase mainly applied to blogging. Anybody who has ever bothered to write a blog has wondered about just how successful they can be. It’s really easy to get addicted to stats. They are a popularity poll that gets updated on a daily basis, after all, who wouldn’t want to see those numbers go up?

Advice from bloggers to bloggers often proclaims that exposure and interaction are everything and that more interaction will lead to more exposure. Yep, this is true. However, in following these steps to success, I found myself wandering blindly in a bunch of bloggers who mostly wanted nothing but to offer over the top appreciation in expectation that it would be returned. A comment wasn’t a thoughtful contemplation inspired by the content of a post, it was a currency for return comments. You scratch my back and I’ll scratch yours is all good and well in theory, however how much does attention really mean if it’s only for returned attention’s sake?

I ended up with an RSS feed filled with blogs that I really wasn’t very interested in. The biggest category for personal blogging is parenting and I am not a parent. I was reading all about the children of people that I’d never even met. I followed fashion bloggers even though I didn’t really care about fashion trends. I wanted to support others in the hope that they’d support me. In retrospect, it was all a little bit silly.

I don’t mean to imply that I’m not interested in parents or dresses, some of my best friends are parents or dresses and some of my favourite bloggers write about their children or their dresses. I only mean to say that I don’t have room to be interested in every parent or dress that decides to start a blog.

The truth is, I wanted to be in the in crowd.

Phase 3: Let them all in

Time passed, as it always does. More and more blogs devoted to chronic illnesses began to appear. More and more blogs written by writers who were local to me. More and more friend requests came through on Facebook, more and more Twitter followers subscribed. More and more people in all of my feeds. More and more people than I could ever get to know on a personal basis within one lifetime. More and more people who it felt rude to ignore because I was still in a major “reciprocate or die” rut and I hated to be a hypocrite.

You’ve probably already guessed what happened next. Always accepting requests, following back and subscribing meant that my feeds started to flood. My Twitter feed was jumbled garbage, often with fifty people offering useless comments on the same news items. I could no longer get to know new people because their updates got lost in the crowd.

I didn’t feel as though I could just unfollow anybody, because reciprocate or die…and so, I hid. I made short lists for updates from my closest friends and ignored everybody else. This worked for a while, until I realised that I’d thrown out the baby with the bathwater. I’d cut myself off from fulfilling online relationships when I ran away from the pointless ones.

I’d dammed the rivers that brought me regular sources of inspiration.

Phase 4: Hey, you’re interesting!

After taking some time out, I decided to refine all of my social media feeds by taking reciprocation out of the equation. I unsubscribed from the blogs that I always found myself scrolling past anyway. I stopped following people whose tweets annoyed me, depressed me or bothered me for whatever reason. I hid updates from Facebook friends that I never interacted with, or who tended to post a lot of stuff that I didn’t really want to see.

I thought about the ways that different social media platforms are good for different types of sharing and made some conclusions that work for me.

Twitter is for entertaining me. This is usually through humour or poignancy. Only I can decide if following a particular account is enriching my existence or simply flooding my feed. I chose to let go of the idea that reciprocation is necessary for me to enjoy the thoughts of somebody else. I now follow many accounts because they entertain me, regardless of whether or not the other person cares to follow me back. It turns out that somebody doesn’t have to like me back in order for me to find them interesting.

Facebook friendships are for people that are interested in knowing me, who I am also interested in knowing, personally. Some of these are people from the real world, some are people that I’ve had a meaningful, online connection with. I allow subscribers on my personal Facebook account, which means that anybody can feel free to receive my public updates without me having to feel like I need to be friends with everybody who is interested in reading this blog, or who lives with chronic pain. Don’t get me wrong, I’m super grateful that anybody finds me interesting at all, it just isn’t a thing that means I have the capacity to reciprocate all of those feelings other than in a thank-you-everybody, or responding-to-specific-comments/messages type of way.

Facebook is also for pages, which I often find a lot more interesting than personal accounts. I follow a lot of pages related to science news, psychology, coping with chronic pain and a vast array of entertainers. Snobs love to announce that they don’t ever check Facebook because they don’t care what that girl from grade 6 had for lunch…but they’re doing it wrong. Creating a Facebook feed that you like isn’t about forcing others to be entertaining by your personal standards, it’s about finding the pages and people that already are.

Thinking like this has helped me to use the Rellacafa page in a more useful way by basically just sharing things that I find interesting in relation to living with CRPS. People can choose to subscribe, or interact, or not, it’s all voluntary and that takes some pressure off of me feeling like I need to impress if I am going to offer things up for public consumption. I’ll just keep sharing what interests me, others can go ahead and decide whether they like that or not.

RSS feeds (I use Feedly) are for blogs and news. I mean, they always have been, it just took me a while to figure out that I could be more discriminating about what I put in there. If I find myself always skipping past posts from the same site then that’s a pretty good sign that I’m not really interested in that feed, even when I kind of think I should be interested. Unsubscribing from filler gives me a lot more time to read and ponder on the posts that I find more enthralling.

Instagram is…just the best. No, really…it’s great. I love snapshots from people’s lives, especially celebrities that are always jet-setting off to another stunning part of the world. I love artistic shots. I love holiday snaps as much as the little daily moments that people capture. I love following outrageous people and interestingly quiet people. I love watching as people’s interests and activities change over time. I even love selfies. Yep. Love ‘em.

Phase 5: The internet is great when your feeds are in order

I no longer feel like I’m drowning in information when I open my social media feeds. I look forward to the updates that I receive and I usually set my iPad down feeling a bit brighter and more informed than when I picked it up. I have more time to read things that teach me about what’s happening in the world, or teach me to understand what’s happening within myself. I have more time to chat with my friends because I’m not obligated to read pages of updates from people that I’ve never really gotten to know.

I even have more room for making new friends. I know, that probably sounds ridiculous when I’m mostly writing about cutting down the number of people that I interact with, but the truth is that not everybody is destined to be everybody else’s best friend. Some people just click, it’s always been like that and the clicks are easier to hear when there’s less buzzing around us. Instead of scrolling past a hundred updates, I’ll actually pay attention to a few and that feels like a more valuable way to spend my time.

I am mostly looking at things that I like, or find challenging, or interesting. Doing so puts me in a different frame of mind than when those goodies were constantly broken up by things that frustrated or annoyed me. I am less judgmental of people in general and that seems to make me care a whole lot less about whether or not somebody wants to judge me for the things that I share online.

I feel free to shower the people that I follow in warm fuzzies. I double tap like crazy when scrolling through my instagram feed because I am just plain enjoying the images and the stories behind them. I star or retweet the tweets that I giggle at or relate to. I like and share the Facebook posts that brightened my day or made me think. I comment on blogs when I have thoughts to share and technical difficulties don’t get in the way.

I just go about the internet, genuinely enjoying what I enjoy and have stopped conditioning my interests based on whether or not that interest is interested in me. My senses of happiness and self worth are no longer tied up in how I am perceived online, or in general. I feel free to think things and express them and what more could I want from a world that exists within minds and machines?

Reciprocate or don’t…I’m still going to go ahead and enjoy you. Unless you block me. Don’t block me. Why would you block me? I promise not to be rude.*

I am starting to fit a few productive things into my days. I’m still dealing with some leftover fatigue from the ketamine infusion, but I’m doing my best to fight through the fog enough to kickstart some body strengthening. Yesterday, I ate three times. Yep, breakfast, lunch and dinner. All healthy stuff. It was pretty spectacular. Don’t worry about sending congratulations, I know how impressed you are right now.

My knee is starting to function like a practical joint again. I can use it to do things like stand on my legs for a little while and walk around the house. I have to stretch it a lot and try not to keep it bent for too long, which is rather tiresome, but I am enjoying the standing and so I will continue sucking up to my knee by playing physiotherapy princess.

I will do my stretches and exercises, even though they are very boring.

It’s a struggle to muster up motivation at the moment. I feel like I’m lagging behind life.

I didn’t expect to feel this way after the infusion. I knew there would be a bit of recovery time, but that time has been dragging on. I have lived with untreated CRPS for so long that now that a treatment finally helps, all I want to do is slip on my bright pink runners and sprint off into new adventures.

It’s been too long since I’ve been able to wander through trees!

Ketamine is not a cure, however. It’s not magic. It’s a tool and like most tools, it doesn’t do the work by itself. There’s a lot of work involved when attempting to rehabilitate a rewired body. A lot of work that needs to be paced out over an indeterminable amount of time.

I will do my stretches and exercises, even though they are very boring.

My pain levels are still lower by my standards, but pretty high by regular standards. I’ve been weather flaring and pain spiking and that sort of business is hard to predict. I need to keep my goals simple until I’ve regained more strength.

I hope this message reaches you. I seem to have gotten stuck in a post ketamine holding pattern and I’m no longer sure whether or not the world is out there, whether people will still understand English or that anyone even remembers what a blog is…

The infusion was pretty super dooper (for those that haven’t been playing along on social media, I spent last week hooked up to bags of ketamine that dripped into me through holes in my belly for five days). My pain dropped more quickly than during the previous infusion and I enjoyed some delightful, glorious relief. I had a little flare up on the second to last day and so had a pain relief boost in the form of a bag of lignocaine that also dripped into me through belly holes.

I came home at about dinner time last Thursday and promptly passed out in the sweet, sweet comfort of my own bed.

Which is basically where I have been since then. I’m so very tired. I don’t feel like I snoozed in a hospital for five days, I feel like I went on a drug fuelled party rampage. I feel like I was awake the whole time, which is almost the exact opposite of what really happened. It’s no surprise, what goes up must come down and, also, the same week long episode of fatigue struck me after my last infusion. I mean, I’d have to have a pretty short memory to be surprised right now…

Except about this injured knee that I have. This is new. Well, new-ish. I (allegedly) injured it a few weeks ago by doing absolutely nothing. I’m serious, I sat wrong on the couch or something. Who knew that couches had a right?! It’s political correctness gone insane. Or something.

Anyway… I had the osteopath release the pressure so that my knee would stop feeling like it was going to explode and now it is really sore and soon it will be better again. Knees, ugh… Am I right?! Fickle joints they are, flimsy and fickle.

In the meantime, I’m waiting for my brain to wake back up, which isn’t going to happen today, which I can prove because I’ve had three coffees and it hasn’t happened and it’s after 4pm and that’s just basic science.

As for how the ketamine has affected me? CRPS pain is still low. It’s still present and bouncing around as the weather changes and sorer in some moments than others, but overall the peaks are lower than pre-infusion. If things keep trucking along like they did after the last time, the pain levels will stay low and maybe even drop further once I get over this fatigue.

Aside from a few strolls around the block, I haven’t been up for much movement yet. My brain and body wake up a little bit more each day and as I regain my powers, I will be using them to focus on physical therapy. The ketamine gives me a little break from astronomical pain levels and the best thing that I can do with that break is strengthen my body to better cope with future challenges.

Love & Recovery Snoozes,
Caf

P.S. In very sad other news, I had to say goodbye to my dear little Lucy-beagle a fortnight ago. It comforts me to know that she’s no longer in pain, but God damn do I miss that sweet little face with the floppy, floppy ears. I keep expecting to see her where she always used to sit… The missing, it hurts my heart.

The physical pain of CRPS has been highly restricting me for several weeks now. Well, it’s been doing that for over seven years, but what I mean to describe is a higher level of incapacitation than I was dealing with before the slump began. Mentally, I’m coping really well, which leaves me existing in a strange mind/body duality that I’m trying to figure out how to communicate.

This is a world of sharing, for those who choose to participate in the whole social media thing.

Me, Instagramming a day of forced lying down.

Sometimes, I wonder how healthy people perceive my updates. A lot of people online will exploit any sort of tiny complaint for sympathy and a million x’s and o’s. If you’ve never seen an “I have a cold” post followed by a bunch of “Oh, that’s TERRIBLE” comments, then you haven’t been on social media for very long. Whilst I don’t really care about whether or not anybody else wants to fish for sympathy for whatever reason, I do worry that people who follow my posts might think that I’m doing the same.

How do I share pain without misery? How do I share isolation without loneliness? How do I share incapacitation without frustration? How do I share a life of chronic pain without being a chronic complainer?

“Complaining and whining can be distinguished by the nature of the dissatisfaction and by our motivation for expressing it. Complaining involves voicing fair and legitimate dissatisfactions with the goal of attaining a resolution or remedy. When we voice legitimate dissatisfactions but do so without the goal of attaining a resolution we are merely venting. And when the dissatisfactions we voice are trivial or inconsequential and not worthy of special attention, we are whining.” – Guy Winch, Ph.D, The Difference between Complaining and Whining, The Squeaky Wheel

For me, an important difference between complaining, venting and whining is the way it makes me feel afterwards. Lately, I’ve been experiencing some extra pain and discomfort in my left hip, knee and ankle. It’s an elevated level of pain to the usual drone of CRPS and a more muscular-skeletal feeling pain than burning nerves.

Being pained and incapacitated is a legitimate dissatisfaction, so whining about the actual problem is not exactly possible in accordance to the definition above. What I am able to do, however, is whine about how this pain effects more trivial parts of my day. You know, “I can’t go for a waaallllk”, “I can’t bake cooooookies”, “I don’t want to watch the criiiccckkett” (specific for those who don’t like cricket, nor do they love it, but they totally get that reference because they fell for sports fans).

How does whining make me feel? Well, mostly amused because these days I’m joking, but I haven’t always been this clearheaded. Were I feeling weak, I might just fool myself into believing that the things I am whining about actually matter and then begin to feel genuinely upset about them. In that instance, the main accomplishment of my whining would be to add a smaller, more immediate problem on top of what I’m already dealing with. Creating problems from nothing is a pretty silly thing to do, but I dare you to claim that you’ve never done it…

Whining will only make the problem bigger, but I can vent about it. Sometimes, venting can help you to release something that’s been boiling inside, however, let venters beware that there can be downsides. If you’ve been reading this blog for a while, you’ll know that I can spend a lot of time venting. Years, even.

How does venting make me feel? Different now, than earlier. It used to feel good to just blurt out anything and everything that was wrong. Venting about the same, unrelenting problem for years can stop helping and start hurting my chances of moving on and out of that emotional loop. There are only so many times that I can feel the same feelings, release them, generate them again and release them before it starts to seem like they are just too domesticated to be returned to the wild.

They’re my feelings, I have to own them and deal with them instead of yelling them at anyone who’ll listen. Dealing with them involves a lot of introspective work on changing my beliefs and perspectives, it’s a lot harder than venting, but I am feeling more calm and in control the longer I work at it.

Venting can be super helpful when you have a lot of anger to get out. Venting can be ridiculously satisfying in the short term. Eventually, feeling angry can become grating and tiresome and so learning to understand and hush the sensation before it builds up to explosion point becomes a more useful goal.

I can definitely complain about my pain. Complaining doesn’t have to be a negative thing. In the instance that I couldn’t figure out why I’m in extra pain, I’d show up at the GP, get complaining and get some sort of action plan happening. As it is, I know that this discomfort is being perpetrated by a little twist of the pelvis and that the most likely reason for this is muscles tightening when they really don’t need to be. I’ll be going to complain to my osteopath about this later in the week and then he will do some rubbing and adjusting and there’s an excellent chance that I’ll end up feeling better.

Complaining isn’t weak or a character defining thing, it’s basically just asking for help when you need it.

The ugly truth is that I live with a highly debilitating case of Complex Regional Pain Syndrome. The confusing part about sharing my life is that I tend to feel better if I’m not constantly acknowledging that this is an “ugly” truth. When it’s just the truth, I can get to dealing with what I can still deal with, I don’t have to be held back by feeling horrified by my situation.

It’s easy to perceive a life of pain and illness as pretty shitty, that is, unless you’re the one living it. It’s way harder to perceive you’re own life as pretty shitty, those sorts of feelings are truly horrible and lead to things like frightening suicide statistics. In order to play the hand I was dealt, I have to keep finding ways to perceive a life of pain and illness as not really that shitty and perhaps even awesome sometimes.

If I just keep working on communicating this point, maybe my strange mind/body duality won’t seem so strange at all. I mean, you read this whole post, you totally get it now, right?

Love & Pondering,
Caf

P.S. I am attempting to utilise the Facebook page for this blog more often to share links that you might find interesting and personal updates related to coping with chronic pain. This helps to stop me from spamming everyone I have ever met from my personal account. Click on over to Like Rellacafa because you want those posts, or just because my grubby dogs think that you should.

When I first developed CRPS and started interacting with the online chronic pain community, I remember one warning that was broadcast repeatedly from many patients who had been playing this pain game longer than me: “You’ll find out who your real friends are”.

Click image for source.

This seemed like a rather strange prediction. Would my friends not like me any more because I am sore? Because I can’t do all the things that I used to? Because I was suddenly about to sprout three heads that would incessantly mock everybody in singsong harmonies?

What’s a “real” friend anyway? At the time, I hadn’t yet developed relationships with any personalities that I’d imagined and projected onto inanimate objects. Sure, friendships exist in different degrees, but I wouldn’t have labelled any of mine as “fake”. I mean, I wasn’t in high school, I think that the days of tribes of girls wanting to befriend me for my gorgeousness and popularity were already behind me.*

And so, I journeyed forward through my chronic pain, preparing myself for the revelation of who my real friends were. I kind of just hoped that when they appeared under their halos, I would actually like them too. Obviously, I didn’t want to be friends with no losers. Or, you know, boring people.

Nothing changed for a long time. My CRPS progressed, my incapacitation increased and I was forced to start wading in the murky waters of mental coping. I kept an eye on them, but none of my friends vanished unexpectedly. Of course, that doesn’t mean that some friends didn’t flow out of my life on the currents of change.

Transient friendships always end that way. They were never meant to last forever.

Friendships are formed through situations, interests, or any sort of activity that groups people together. Eventually, people get new jobs, or they move away, or they get interested in new things. Often when circumstances change, friends drift apart and float away into the next chapters of their lives. These endings don’t mean that the friendships weren’t real, they’re just a part of life in a world that’s always changing.

The ending of a transient friendship can feel confusing if one friend is moving on and the other is stuck in place by illness. Shifting from living a regular life to a painfully restricted one is a tough adjustment. It can seem like the whole world is just passing by and feeling left behind can hurt like a bitch.

It’s not just transient friendships that change. Friendships that span years and lifetimes are also changing along the way. Those deeper friendships exist because the friends have the ability to ride the changes together, to adapt to one another, to accept each other as growing, living beings. Old friends often find themselves distanced from one another and then really close and then distanced a little again. That’s how life goes. It can just be hard to see this when it feels like all of the good things happen to the friend that isn’t you.

Navigating our own minds can be difficult. Sometimes, feelings are really big and it’s not always obvious why we’re feeling them. It can be easier to blame that friend that never visits for the fact that we feel lonely and sad, rather than accepting that the sadness is coming from how we are coping with our personal situation.

Sometimes, sadness just needs to run its course, it’s no one’s fault.

There are some friends that I kept in touch with for a while after developing CRPS, until our lives took us further apart. There are some friends that I simply never saw again. There are some friends that I catch up with rarely and there are some friends that I’ve remained close with. There are even a few new friends.

At some point during the years that I have been learning to cope with CRPS, I have felt betrayed by each and every one of them. You see, there are a lot of things about chronic pain that can make a person angry and anger is always looking for someone to blame.

When I felt isolated and cut off, I often felt angry at people for not visiting rather than angry at the disease for keeping me locked up. I felt angry that nobody was showing up to make me feel better. I felt like their absence meant that none of my friends really cared about me, or cared that I was hurting. I felt like nobody even wanted to understand me or what I was going through.

I felt a lot of things that weren’t fair on anybody.

I cried and I cried and I cried…

It took me a long time to figure out that there wasn’t a bad guy. I felt so alone and I was stuck at home, surely the onus was on my friends to come to me? Maybe in a sitcom world, but not so much in this one.

Because people have lives. People are busy and imperfect and are usually trying their best at life. Sometimes, people are overwhelmed when confronted by illness, or confused about what to say. Sometimes people stay home because they feel anxious or insecure. Most people have a whole lot of things going on that have absolutely nothing to do with the friends that they care about.

And friends are people.

Eventually, I became aware that I was spending a lot of time hating the people that I love for no valid reason at all. Nothing that has happened to me in terms of my illness has been their fault and maintaining my happiness is not their responsibility. I have different sorts of friendships with different people and it’s OK that they aren’t all the “bring roses to your sickbed” type of friendships. I mean, too many of those would make them a little bit less special now, wouldn’t it?

I had to let go of needing other people to make me happy. I had to let go of wanting to be needed. I had to let go of craving approval, or inclusion, or whatever it was that I thought my friends should be providing for me. I had a lot of forced quiet time last year and once I was done raging about it, I used that time to observe my thoughts and disregard any that were not helping me to be a happier person.

I decided to remove the obligation from what I understood friendship to be. I stopped paying attention to angry thoughts about other people and acknowledged that if I felt angry, it was coming from within. I refused to be annoyed at people for literally doing nothing. It was never their fault that I thought they should be doing something. I mean, what sort of queen did I think I was?

I stopped creating expectations for friends that they were unaware of and focused on enjoying whatever aspects of a friendship were available to me.

Life got a whole lot more enjoyable after that.

Now, when I feel upset, it’s easier to figure out what I’m really upset about without a bunch of blame and anger blocking my view.

It’s easier to spend a lot of time alone, now that I’m not blaming anybody for it. In fact, I think I quite enjoy having plenty of time to look after myself and reflect on things. It’s easier for me to recognise the friendships that were only ever going to be transient, whether my illness had happened or not. It’s also easier to recognise that all of the anger and hatred directed at my friends was only ever happening inside my head. It was only ever hurting me.

Most delightfully, it’s easier to appreciate my friends, all of them. The long-lasting ones and the short-termers. The share-everything-with ones and the casual-joke-partners. The see-regularly ones and the only-catch-up-with-occasionally ones.

I guess that CRPS has taught me who my “real” friends are, just not in the way that the warnings implied. All of my friends are real, there aren’t any mannequins in my contacts (sadly). Some of the friendships run deep and others barely scratch the surface and that’s OK. Some friends are utterly amazing at cheering me up when I’m down and others aren’t and that’s OK too.

Some days I’ll get overwhelmed and angry and have to remind myself about these important realisations about friendship all over again. And that’s OK too.

Do you ever get stuck on trying to do something and then you can’t do anything else until it’s done, but then it never gets done and you realise that you never really had to do it in the first place?

No? Just me then…

I’ve been meaning to tell you about my second ketamine infusion by recording a video blog. I haven’t quite had the energy over the holidays and so anything else that bumbled across my mind that seemed worth blogging about got pushed aside into the “after the vlog” pile.

The day before yesterday was finally the day. I was feeling bloody awful as I’ve spent this past week muddling through a heap of seasonal flaring. I thought I’d be productive in spite of the pain and so I painted on a less blotchy face and sat down in front of the laptop.

Once there, I tried to figure out how to talk like a regular, comprehendible person. It took several takes before I got my vlogging mojo back and started to make sense. I really don’t spend a lot of time conversing these days. It can be hard to remember things like “joining thoughts together” and “stop talking when it’s not adding anything”. Eventually, I got it done.

I mean, I think I did. I couldn’t manage to watch all the footage play back at me. This isn’t one of those insecure, “my own voice on tape” things, it was just because the whole damn lot of it recorded with the audio out of sync. I have no idea why. So, naturally, I gave up and let the delete button have its way.

I suspect that there is no why. I think this is just the fates mocking me for my silly little “nothing happens until after this vlog” stunt. If I tried to record something now, it would probably work just fine.

But I am done with that. There will be no vlog! Haha! Take that, mind block. Look, I’m just going to straight out tell you what happened in, like, a few paragraphs or something. Read on, sucker!

In my last post (before the mind block), I mentioned that I started seeing a new pain specialist who was willing to try another ketamine infusion with me. I went in for a five day infusion in October last year.

Getting infused. Like a boss.

The whole experience was a completely different one to that horrible infusion that I endured a few years ago. It was only half as long and the drug was administered much more slowly than the first time around. I didn’t have any crazy hallucinations or nights of ridiculous nausea to get through. I was mostly fine, other than feeling a bit out of it because of being on drugs and all.

My pain levels dropped slowly but steadily. By the third day, I was a few points down on the pain scale. I then had a second drug added, this one was lignocaine and went for 12 hours, in a separate infusion point to the ketamine. While both drugs were running, the pain dropped to the lowest I have felt in years. It was both utterly amazing because of the relief, but also incredibly shocking because I could clearly realise just how much pain I deal with on a daily basis. It’s….a lot.

Double infusion.

Following the infusion, I didn’t have any of the almost immediate, painful reactions that I had the first time around. I remained really calm. My pain levels were low, even though stormy weather had my hands and feet swelling and sweating like they do in a full flare. That was one of the strangest things, to feel the symptoms of a flare without the all consuming pain that usually overpowers my perception of them.

I spent about a week resting and recovering. My pain levels fluctuated a lot during that time and it was hard to tell if the ketamine was going to provide any lasting relief.

Soon enough, I was able to start moving around and building strength again. I was pleased to discover that my general level of pain was about 2 points lighter than before the infusion. This might not sound like much, however, for me it was the difference between never being able to do anything and being able to walk/cook/drive in small but useful amounts.

I put all of my pain rehabilitation training into effect and paced out my activities throughout the days, slowly attempting to improve and increase what I was doing. As well as a slightly lower pain level, I found that I needed less recovery after activities than before the infusion. Instead of going for a walk and then being stuffed for a week, I could go for a walk, rest the next day and then go for another the day after that.

I’ve continued working each day and doing what I can to improve my strength. My abilities started to decline a little around NYE and I have been dealing with increased flaring since then. I think that this has little to do with how I am managing and a lot to do with the Melbourne weather being unable to decide whether it’s going to do Summer or not.

Even though I am back in a bit of a flaring rut, I am still feeling positive. My mood has been surprisingly stable since the infusion. I found a lot of clarity in feeling the pain melt away whilst on ketamine. Living with a high level of pain all the time can get confusing and sometimes, even I start to wonder if it’s really as bad as it feels. Having the pain relieved for a bit and then returned gave me a really clear perception of just how much I am usually dealing with. All of a sudden, I was able to be a little bit easier on myself for not having achieved anything in the past few years other than survival.

It’s only about three weeks until I will go in for another 5 day infusion. Knowing that there is relief up ahead is making coping with the recent bout of flares a lot easier. There is the possibility that the next infusion will have a cumulative effect on the first and bring me even more relief, which is what I’m hoping for. However, even if the pain relief is not lasting, just knowing that I can go and have a little break from the battle I fight 24/7 creates a kind of mental relief that is well worth going to hospital for.

And so, there you have it. Ketamine infusion the second: described. Mind block: demolished. Achievement unlocked!

I can officially blog about whatever I want, whenever my hands will let me, PHEW!

Many moons have passed since I first gave up hope that doctors could help with my CRPS. I’d tried everything, you see, everything that was available. I worked hard at physical rehabilitation. I attempted to keep moving and build strength. I practised Feldenkrais to ease pain and improve neural pathways. I learnt new ways to relax, to let go and to continue coping with the trials of constant pain.

Each time I slid backwards from an improvement, doctors concluded that either the medicine didn’t work on me, or that I had psychological issues preventing me from trying hard enough. The repetition of this cycle ran through several doctors and twice led to me being shown the door that opened from the doctor’s office into a cold, painful world of loneliness and despair.

I was a frazzled panda (click image for source)

After a while, it was hard not to believe them. Was my condition too obscure to be treated by modern medicine? Was I trying hard enough? And so, I’d crumble for a while and then I’d try even harder. I’d find a new doctor, one that was willing to learn with me. I’d find a way to improve, to take the first step upwards and to climb even higher before the next fall.

Finding motivation to heal was never my problem.

I have a theory as to why chronic pain patients often encounter the attitude that they are being lazy about improving their own condition. It’s because a lot of people actually are lazy. There are lazy people who are sick or disabled, same as there are lazy people who are perfectly healthy. Some of these people are miserable and some are quite content, that’s their business. The important thing is that none of them is a representation of any other individual.

It can be hard to remember that. As hard for professionals as it is for the rest of us plebs. We love to generalise, it makes understanding the things around us easier. In searching for a non-vindictive reason why some doctors might treat a patient terribly, it occurred to me that perhaps those doctors are merely unaware that they are blinded by patterns.

Could the answer be that simple? Doctor sees a lot of patients that are not taking whatever steps are possible for them to improve their condition. Then, doctor sees patient whose condition is declining and assumes, regardless of what their mouths say, that one of these things is exactly like the other. I mean, they look the same, right? Sick, miserable people. It’s easy to assume that the one proclaiming to have followed orders is suffering from a lying mouth, rather than real but immeasurable symptoms. It’s much harder to approach each patient with a fresh slate and an open mind.

I guess some doctors are lazy too.

For over a year, I pulled myself out of the cycle. I couldn’t find the point of continuing to pay steeply to spend a few minutes with a specialist that could only offer me repeat prescriptions for meds and rehab. I found that I was doing better on my own. I used the skills I’d learnt and I did the best that I could. I improved a lot before the big crash of 2013.

After months of being at my lowest, unable to look after myself, unable to do much of anything at all, I desperately looked back towards the doctors. I returned to the last pain specialist I’d seen, only to be directed back towards pain rehabilitation programs that operate at a beginner level. I was already well advanced at “doing my exercises”, “pacing myself” and handling psychological pressures. I didn’t feel like the answer to my decline in health was to have somebody re-teach me the things that I was already doing.

The CRPS had outgrown the rehab, it was bigger and uglier than it had ever been before. I needed something more than inspiration or a kick up the butt to bring me back.

For a long time, my GP had been recommending that I see a local pain specialist. I was not very keen. I just…couldn’t be bothered. I couldn’t be bothered rehashing my long and complicated medical history to a new doctor when there was no hope, no new drugs, no fancy new treatments. I had to reach utter desperation before I could even consider beginning again with a fifth pain specialist.

Mostly, I made the appointment to placate other people. You know, the people who love me and wouldn’t let me give up. The ridiculously amazing people that were looking out for my wellbeing when I was too lost to do so for myself. I waited months for the appointment and still, the day before, friends and family had to talk me into going through with it when I just couldn’t see the point.

I am so grateful for their hope, it was lighting the way to a brighter future that I no longer believed in.

My new doctor has been the most helpful pain specialist that I have seen. No, there aren’t any new and amazing treatments for CRPS. However, there is this older one that he was willing to try again…

It turns out the undesirable reaction that I had to my first ketamine infusion was not the giant stop sign that the rest of the doctors saw. My reaction (a fairly severe withdrawal process, you can hear the story from past me here) was not “impossible” as I had been told by the specialist that oversaw it. It was simply a reaction that was not the one we were hoping for. It didn’t mean I needed a giant red KETAMINE stamped in the allergy section of my medical file. Most importantly, it didn’t mean that another infusion would have the same result.

The thing about the new doctor is, he’s logical. He completely validated my previous experience with ketamine and agreed with me that one messy infusion was not enough to conclude a drug allergy from. He didn’t treat me like a drug seeker for wanting to try it again. One failure was not enough to prove that ketamine would always fail.

So we did it again, differently. Mid-October, I was admitted into hospital for a five day ketamine infusion. It went well, but I shall save describing the experience for another day.

This post is about hope. I lost hope in doctors, in the medical system, in my body, in my life… Had I not had wonderful people pushing me to continue trying new doctors, I’m not sure that I would have done it on my own, which would have meant missing out on the best opportunity for improving my CRPS that I’ve had in years.

I’m so glad that my new doctor did not make presumptions about me. I’m so glad that I didn’t pigeonhole him before he could help me.

Post navigation

In 2006, I was diagnosed with Complex Regional Pain Syndrome (CRPS), aka Reflex Sympathetic Dystrophy (RSD), in my right ankle. This eventually spread to engulf my whole body, a condition known as Central Neural Sensitisation (CNS).
I've tried dozens of medications, endured hospital stays, spent years using mobility aids and been labelled incurable by doctors. They gave up on me, but I never will.
Every day, I work to retrain my brain and fight to regain function by educating myself, opening my mind to new possibilities and overcoming the challenges thrown at me.

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.